Paper short abstract:

This is an account of a research process used in researching experiences of terminal cancer. By connecting reflexivity and emotion with interview and focus group material, I reveal how an anthropological approach can be applied beyond participant observation and ethnographic fieldwork.

Paper long abstract:

This paper draws on a study which explored research methods and approaches applicable to end-of-life research. We conducted a systematic review, 31 semi-structured interviews with researchers and 4 focus groups with people affected by cancer. In this paper, however, rather than privilege taped interviews or focus group material, I demonstrate how my own experience and subjectivity became an integral part of the analysis.

This paper provides an ethnographic account of a piece of research that aimed to explore research methods and methodological challenges of cancer research. Rather than present the study and 'results', as is the norm in biomedical research, I discuss how anthropological training shaped both a broader understanding of the meanings of cancer and contributed to a greater analytical depth. During this research, my first visit to a hospice elicited feelings that connected with memories of caring for a person with terminal cancer. However, revisiting this past experience through the lens of the present offered a window into understanding the impact of cultural constructions of health and illness that eventually illuminated the final analysis in significant ways.

Exploring the challenges of conducting research in this field requires a reflexive engagement with socio-cultural constructions of cancer. This reveals that for many, cancer is a 'Bogeyman' that must be laid to rest before we can truly do sensitive research in this area. Only then can researchers go beyond constructions of 'the patient' and seek to engage with the person and their experience. By connecting reflexivity, emotion and a wider notion of what constitutes 'research' or perhaps 'research evidence' I learned that while persons with cancer may raise their voices above and beyond 'the disease', it appears that often researchers do not.